Often times we have a plan for our life that we may have created the idea a long time ago, and then when life throws a curveball not only do our plans have to change, but sometimes that leads to disappointment and discouragement.
Getting diagnosed with a chronic illness is definitely one of those curve balls life can throw at you.
I know for me personally, I’m a perfectionist and a planner, so needless to say celiac and the modifications I’ve had to make were not part of my plan.
My mom is a strong woman who taught me at a young age that fear is not an option in life and when things get hard you can adjust your plans, but don’t give up on them.
Although she doesn’t have celiac disease, she has overcome the challenges of living with a chronic illness. She combined her passion of shoes and entrepreneurial spirit to create a platform to raise money and awareness for Parkinson’s disease.
Below I’ve asked Tonya to share her story and I think you’ll find her incredibly inspiring!
What was life like before your diagnosis?
My husband and I were married newly married. We had just bought a new home. We had great jobs working as commercial litigation attorneys. I guess you could say we were living the American dream. Just two months after we married is when my first symptom appeared, but it would not be until almost two years later that I was officially diagnosed with young onset Parkinson’s disease. During a part of that nearly two-year period, I was pregnant with my son. My pregnancy exacerbated my initial symptoms. By the end of my pregnancy, I could hardly dress myself.
How has your life changed since your diagnosis?
Living with a chronic illness will definitely change your life. I lived in denial and depression for several years until I finally was able to “accept” the diagnosis. I struggled with the fact that I was 34 years old and had been diagnosed with an incurable neurological disease that is typically seen in persons twice my age. At the time, there was very little information available online about Parkinson’s disease affecting a younger population. For me, it was easier to not tell people and to live in denial.
The years of denial were difficult years -difficult for me and difficult for my family. It took me having brain surgery to come to terms with my diagnosis. In some way, I felt like accepting the disease meant that I had let it win. However, as Michael J. Fox says “acceptance doesn’t mean resignation.”
Once I embraced the diagnosis, my life became much better. Instead of fighting the disease and living in frustration because I could no longer do things I used to be able to do, I began doing those things, but in a way that my body would let me. Parkinson’s is a very humbling disease. Every minute, every day, the disease is attacking the body. It is relentless and will wear you down – if you let it. Instead I choose joy in everything, every day. I have a new perspective on life. In some ways, I think Parkinson’s has made me a better person. My faith definitely helped me navigate the “lost” years and now the years of acceptance.
Have you always had the entrepreneurial spirit?
I think that I have always had it in me, but it really did not come out until acceptance of my diagnosis. It’s amazing how Parkinson’s has motivated me to do things that I otherwise may not have done.
What inspired you to start your blog/business?
I have always loved shoes. Seriously. Since I was old enough to walk, I was obsessed with shoes. Unfortunately, Parkinson’s began to impair my balance. I was no longer able to wear my favorite high heels. It was truly tough to walk into my closet and look at all of my shoes and know that I could only wear tennis shoes or flip flops. Needless to say, I invested in some cute flats.
Then in 2013 my life changed dramatically. I had Deep Brain Stimulation. It is a procedure where electrodes are implanted in the brain and are stimulated by a neurotransmitter. I often refer to it as a pacemaker for my brain. The electrodes help manage the symptoms of the disease. One symptom it helped me with was balance. I quickly realized I could wear my favorite high heels again. I started my blog – The Shoe Maven, as a celebration of me being able to wear high heels again. But, I also wanted to change the perception of Parkinson’s disease. I felt some sense of guilt living in denial because those are “lost” years because I was not proactive. I did not want others to experience what I had. The Shoe Maven serves as a platform for me to promote Parkinson’s awareness and fundraising while also sharing my love for fashion and shoes.
How did you decide on the type of business you wanted to start?
The blog is the Parkinson’s awareness component, but my husband and I really wanted to be involved in fundraising to benefit The Michael J. Fox Foundation for Parkinson’s Research. We fundraise through Team Fox which is the grassroots fundraising part of the MJFF. One hundred percent of every dollar raised through Team Fox goes directly to fund research for a cure. This year we held the third annual Art of Fashion event to benefit the MJFF. Over the three years we have raised approximately $30,000 between The Art of Fashion and other fundraisers like running races. This November my husband and I are running the New York City marathon to fundraise for MJFF.
How do you run your business, but also take time for yourself and your health?
There definitely has to be a balance. I work full-time teaching Legal Research & Writing to first-year law students. Arguably, managing a chronic illness is like a full-time job too. My husband is a big help, but he has a full-time job practicing law. Honestly, I could not do a lot of what I do without his support. Each day I only have so much energy so I carefully plan my days and accept that I can only do so much. If I don’t set limits, I end up being exhausted which is not good. Stress and exhaustion exacerbate my symptoms and can wipe me out for days. Balance is the key. Although it’s easier said than done. So I rely on my faith in God. I thank God everyday for what I have. It could be worse.
If you could go back and give yourself advice when you first diagnosed (knowing what you know now), what would you say?
A lot of things, but the primary theme would be the words of Michael J. Fox – “acceptance doesn’t mean resignation.” The diagnosis does not define you.
What advice do you have for other young women struggling with a chronic illness?
We all struggle with different things and cope differently. Just know that you are not alone. Try to connect with others who are living with the same illness. The best thing I ever did was to start fundraising for Team Fox. I was able to connect with others affected by Parkinson’s and who also have a positive outlook.
What advice do you have for women who want to start businesses?
Find something you are passionate about and make it your business. If someone is already doing what you want to do, learn from their experience and then find a way to make it better. I have found when I’m on the right path the doors keep opening. Find your path to the open doors.
A big thank you to Tonya for taking the time to do this interview! My hope is for you to realize that whatever challenges you’re faced with, to know that you’re not alone. This is a reminder to have faith over fear and create an amazing life for yourself! Be sure to check out Tonya’s fashion and lifestyle blog “The Shoe Maven”.
You can read my previous interviews: